A Discouraging Update

I apologize for the delay of this entry...We have had a very busy, overwhelming, and discouraging two months. We have learned many new things about our little Ziva over the past 8 weeks and, sad to say, none of them are encouraging.

In May, we had a screening done at a place called Community Living North Halton. This screening was done to determine if Ziva would be eligible for services provided by the government. Ziva was assessed in 5 areas, and not surprisingly, she qualifies for help in all areas. In order to receive these services, she needs to be enrolled in a day care or nursery school, so we have signed her up for nursery school 2 days a week beginnging in September. (On a side note, she needs to be potty trained by then, so the pressure is on!)

Ziva is now seeing an Occupational Therapist once a week. The OT's assessment put Ziva developmentally at the level of an 18 month old. It seems that Ziva also has sensory processing issues. Because of the lack of stimulation she received in the orphanage, her ability to take in and process what she senses is "messed up", for lack of a better term.

The fact that Ziva was not held, rocked, cuddled, hugged, tickled, etc as a baby has also had a profound affect on her. As a result of not receiving outside stimulus, she has learned to self-stimulate. So we are now "feeding the need" to be stimulated and are providing Ziva with appropriate activities.

Ziva also has a "constant need to move" (OT's polite term)-which for those of you who have met Ziva, is an understatement. Her need to move is "overriding" her other needs right now, which in turn is preventing her from having any sort of attention span, which in turn prevents her from learning new skills. With the OT's help, we have learned techniques to use when we play with Ziva that balance the physical movement she needs with the skills she needs to learn.

Ziva's speech delay continues to be our foremost concern. She has been working with a Speech Therapist once a week for the past 8 weeks as well, and so far, the progress has been very slow and the prognosis not good. Ziva is able to make a few new sounds (b,p,h) and a couple of vowel sounds. But, unless prompted by a toy or a treat, she does not use these sounds; instead she just reverts back to "mu". She is unable to put two sounds together and is not able to mimic any words/sounds. The speech therapist believes she has something called "apraxia of speech". This is a neurologically based motor planning speech disorder. There is a breakdown in the transmission of messages from the brain to the muscles in the mouth that facilitate speech. A "roadblock" is obstructing the signal from the brain to the mouth. What this means, practically speaking, is that Ziva is unable to move her mouth in such a way as to make sounds; she will have to be taught (by physical manipulation) how to move her mouth to form sounds.

The speech therapist has referred us to the Speech Foundation in Toronto where they specialize in speech apraxia. For now, Ziva will continue to work with the speech therapist, but what she really needs is intense therapy with specialists. There is a 12 month waiting list (I am getting so tired of waiting lists!!) for the Speech Foundation. So I guess we are destined to hear "mu" for many more months to come (ugh!!).

As you can imagine, finding out that Ziva has a severe speech delay was difficult and devastating news for us to receive. This is not something that will be easily "fixed" and will require much therapy. In the meantime, I am taking an 8 week signing course which will hopefully foster some communication from Ziva.

The final blow for the month was finding out that Ziva tested positive for the syphilis antibody. This means that she either has or has had congenital syphilis. Syphilis, in fact, is a very treatable disease- it just requires a course of penicillin. However, despite it's relatively easy treatment, syphilis is a terrible disease. One of the affects of congenital syphilis is neurological damage. Now, if you are like us, we are putting 2 and 2 together. Ziva has a severe speech delay that is neurologically based; then we are told that she has/has had syphilis which causes neurological damage and developmental delays. We are very concerned that the syphilis has caused irreversable neurological damage.

Ziva will go to Sick Kids Hospital in Toronto on July 21st. Under sedation, she will first receive a lumbar puncture (aka spinal tap) which will help to determine if there is neurological involvement. She will then get a pickline (IV) in order for her to receive her penicillin treatment. She will be able to come home, but for 14 days she will have the pickline (attached to a pump which she can wear in a backpack). So we will see how that goes!

Last week's paediatrician appointment answered a few more questions for us. In the 6 months that we have known Ziva, she has not grown at all. She eats like a horse and so we have become quite concerned about her not growing. The doctor told us that he thinks that her not growing is a "symptom" of the syphilis; her body is using all its' energy to fight off the syphilis and so it has none "left over" for growing. (And even though he didn't come right out and say it, that comment implies that he thinks she presently has syphilis.) He told us that Ziva is not a healthy child (which we have concluded by now as well) and once she gets healthy, she should start growing.

We covet your prayers as we continue to grapple with the fact that our "healthy child" is not so healthy after all. It has been a very difficult few months, having to learn about, grasp, and accept the fact that we are now parents of a special needs child. As with biological parents, all we wanted was a healthy child; and we are now working through the disappointment and grief of unknowlingly adopting a special needs child. Don't get me wrong, we love Ziva...but these challenges were not what we expected or wanted.

Because of the many challenges and delays that Ziva has, parenting her often feels like a constant "therapy session". Everything we do with her needs to have a "purpose" or some educational objective. We do this for Ziva's sake, of course, but let me tell you, it is exhausting! She is still not able to play by herself at all, and so she needs constant attention and engagement in order to play. If you are a parent, you know that you get much joy and delight when your child learns something new or says a new word for the first time; with very little progress and no speech yet, those moments are few and far between for us and it is discouraging. We continue to lift these concerns to God in prayer and hope for the day when Ziva begins to talk.

We have also had to deal with the fact that the deceit and dishonesty involved in this adoption continues to follow us and haunt us. We were told so many lies throughout the process- from our agency, to the facilitators, to the orphanage workers- and it seems the lies just keep coming. I would advise anyone contemplating adopting from Ukraine to be prepared for the worst.

Well, that just about sums up what we have been up to (and maybe now you see why there was a delay in this entry!). I'll keep you posted re: Ziva's treatment and progress. Thanks again for checking in!

Ziva is so good with our cat, Simon, now. She's come a long way from being scratched the second day home!

Ziva in her trampoline (she loves to jump!).

Ziva loved dandelions in spring.

May 27th: 4 months since Gotcha Day

June 27th: 5 months since Gotcha Day